Clinical Registry Extraction and Data Submission (CREDS) IG (PSS in Confluence)

The purpose of this Implementation Guide is to simplify the efforts of healthcare provider organizations to collect the data needed to submit to registries, by making it easier for registries to supply healthcare providers with the information that providers need to prepare a registry submission.

This guide profiles how a registry says what needs to be sent, and how a healthcare provider organization can use that to automate the collection and formatting the data into a submission, conforming to registry or FHIR implementation guide defined profiles and protocols.

This guide will describe the steps to:

- Define the data needed in a registry submission, relying on existing FHIR resources, profiles, and implementation guides

- Describe how this data can be collected and organized through FHIR APIs

- Transform the collected data into content suitable for a registry submission

- Use applicable FHIR operations defined in existing FHIR Implementation Guides to submit the content

- Coordinate with other systems to validate and refine registry submissions, as necessary.

This project proposal addresses the need to provide a common way to describe data collection and submission requirements for disease registries that enables a disease registry to:

1. Describe the data they wish to collect.

2. Define the constraints on the submission to indicate how data should be submitted.

3. Identifying the trigger events that might indicate a submission is needed.

And a healthcare provider organization to:

1. Identify sources of data that might appear within a disease registry submission.

2. Support processes to automatically extract data from information systems.

3. Support processes to transform extracted data into appropriate formats for a registry submission.

Within this project, we expect to reference and reuse existing content available from Common Clinical Registry Framework (CCRF), US Core, Cancer Registry IG, MedMorph, mCode, Breast Imaging, eCR, et cetera, where applicable to demonstrate how systems implementing this IG can support those efforts.

This project will not be profiling clinical data associated with patients, rather it would be reusing applicable profiles to support that in registry exchange.

This FHIR implementation guide will use the US Core profiles. If this FHIR implementation guide is unable to use a US Core profile, we will follow the Cross Group Projects WG's variance request process, and provide the US Realm Steering Committee an approved rationale for deviation in the implementation guide where applicable.